- Frida Simonstein, MSc., Ph.D.Centre for Social Ethics and Policy, School of Law, University of Manchester. UK. Center for Health Care Management, Yezreel Valley College,
Keywords: genetic screening, in-vitro fertilization (IVF) pre-implantation genetic diagnosis (PGD).Introduction Almost two decades ago, discussing in vitro fertilization (IVF) R. M. Hare observed that since the problems are new, we ought to be cautious in applying old precepts to them; these precepts, he remarked "got generally accepted when things were very different from what they are now or may become."( Hare, 1985). Ronald Dworkin, has more recently suggested that genetic science offers a pending dislocation of our moral values (Dworkin,. 2002.). The following case reflects Hare's warning and Dworkin's insight. During 2002 the Human Fertilization and Embryology Authority (HFEA) in the United Kingdom, which regulates IVF clinics, agreed to allow a family to attempt to create a baby genetically selected to help treat a desperately ill child. The tissue typing tests were designed to help select embryos that would match their son who suffers from a blood genetic disease, Thalasemia. At birth - stems cells from the umbilical cord of the newborn would serve to be implanted and thus save the first child. In a second case, however, the HFEA, decided differently and did not allow parents to screen IVF embryos for HLA compatibility to help a sibling, because the embryos themselves were at very low risk to have the same genetic disease. Some reactions against the first HFEA decision, namely, permitting the procedure, have been particularly angry and reflected profound outrage, expressing the feeling that having a child for the sake of the other is improper, immoral and 'against human dignity'. Other claims were, "we should protect vulnerable human life", and "human beings should not be treated 'as a means to an end'"(BBC News, 18 July 2002). The first HFEA decision was brought to the High Court by the public interest group Comment on Reproductive Ethics (CORE), explicitly, "against the right of the HFEA to permit pre-implantation genetic diagnosis (PGD) for the creation of human embryos as specific tissue matches for sick siblings" (COREethics 20 December, 2002). On December 2002 the High Court ruled that the Human Fertilization and Embryology Authority (HFEA) did not have the power to license the technique under existing legislation. But on May 2003 an Appeal Court decision overturned this decision. The judges, however, remarked that this ruling was a "one-off". In the future every case of its type would have to be assessed on its own merits (BBC News, 20 May, 2003). This paper will not address the question endorsed by the Courts in the UK namely, whether the HFEA did or did not have the power to license the technique under existing legislation. The purpose of this paper is to explore whether the societal claims against using PGD for tissue typing - in order to detect HLA compatibility - to save an existing child, as reflected by the media in the UK, are coherent with the values and principles these claims pretend to protect. Claim One: 'We Should Protect Vulnerable Human Life'. Trying to save the life of a child - any child - means to respect and protect 'vulnerable human life'; saving the life of this particular child is therefore the duty of both parents and doctors. Certainly we should always ask what exactly the means and the ends are. In the present case however - not choosing a particular embryo means a death sentence for a living child whilst screening to choose a genetic match may serve a good purpose. It remains obscure why the life of the existent child is less vulnerable - and less important - than the life of an embryo, any of them. Moreover, suppose there is a matching embryo in that petri-dish...
á If we choose it - the existing child lives.
á If we do not choose it - the existing child dies.Not choosing the matching embryo - if there were one in the petri-dish - would be equivalent to getting a rope to save a person from drowning and yet letting him drown. If a parent let his child drown he or she would certainly be liable for negligence.
It remains unclear how and why choosing one embryo that is a genetic match and can save his sibling's life, can overrule human dignity; apart from the fact that this is a novel procedure, which we are not used to. For we search for genetic matches of bone marrow all over the world in order to save a life, and we do not think this is necessarily 'against human dignity'. It seems we approve genetic brute luck because the match, if we are lucky to find one, remains - comfortably for our settled values - a 'lottery'.
Now suppose that, completely by chance, the new child is born a perfect genetic match. If this were the case, we would certainly use the stem cells from his umbilical cord and save the first child. It is unlikely that in this case someone would object to this; which clearly shows that what people fear most is genetic choice whilst genetic chance - is happily welcome. But why is it that genetic choice does threaten 'human dignity' whilst genetic chance is applauded? Ronald Dworkin has sharply observed that it seems the terror many of us feel at the thought of new reproduction technologies (although Dworkin refers specifically to genetic engineering) is not the fear of what is wrong; "it is rather, a fear of losing our grip on what is wrong"( Dworkin, 2002, 446. my italics). Dworkin suggests that we dread the prospect of people designing other people - in this case choosing a genetic match - because,"(t)hat possibility in itself shifts ... the chance/choice boundary that structures our values as a whole, and such a shift threatens, not to offend any of our present values, but on the contrary, to make a great of these suddenly obsolete" (Dworkin, 2002, 444). We may fear losing our grip on what is right or wrong however we ought to define once more, afresh, what the best thing to do under New Reproduction Technologies [NERT] perspectives should be. Preventing parents from saving the life of an existent child is inconsistent with what 'human dignity' implies. For if the process hurts nobody and the life of a child may be saved on the other hand, then we ought to save this life. Even if this new remedy - using NERT - knocks uncomfortably down some of our old precepts of what is right and wrong. Claim Three: 'We Should Not Treat People As A Means To An End' HFEA chairman Suzy Leather denied they agreed to create a baby who would have to give 'spare parts' to save a sibling, she explained that what the authority agreed to do was - only - to allow parents to choose an embryo that when it developed into a child "was not going to suffer from precisely the same horrible disease" (BBC News, 18 July 2002). It is puzzling however why screening to avoid having a child who will suffer from a 'horrible disease' is morally 'right' while screening to choose a genetic match among the embryos to save the life of a living child suffering exactly from the same disease is morally 'wrong'. Human beings should generally not be treated as a means. However there are certain exemptions, for we usually beget a child because we want to rear a child; which means that a child might sometimes serve a purpose, in that case, to fulfill our own desire to become parents. Moreover, sometimes we may choose to beget another child just in order 'to make company' to a first child. Nobody has however ever demanded or thought that this may be wrong. If this is so in those cases then making a child to save the life of another - if the new child is wanted and will be loved - is not different to making a child to play with another but certainly, more crucial. The public interest group CORE, however, proclaims to campaign "against any procedure which puts one child at the disposal of another human being, no matter how emotional and moving the circumstances which motivate such proposals" (see www.coreethics.org). The meaning of which seems to be: "I would rather cut my ears off and my eyes out than hearing or seeing anything that may undermine the actual validity of my moral principles." And yet, there is at least one example of putting a child at the 'disposal' of other human beings to which we are - most unfortunately - quite used: we send 18-year-old youngsters to war. We think this is permissible because war defends our values and our loved ones. In other words we think that to sacrifice the lives of those youngsters for the sake of other human beings is permissible when it is 'for a good cause'. Making a new child to save the other will certainly serve a good cause but unlike in the case of war, nobody will be sacrificed. I will return to this point in a moment. Will The New Child Be Wronged? The cause in this case is undoubtedly worthy, to save the life of an existing child, but the means, namely bringing purposely to life a child by choosing it, one among many others whilst still in a petri-dish, seems to be the problem. However we ought to ask in this case whether this particular embryo would be harmed or wronged whilst chosen. Existing theories of self-interest suggest that we should always choose what is for the best interest of non-existing people (Parfit, 1984; Harris, 1998, Savulescu, 2001). The embryos not chosen however are obviously not wronged because we cannot wrong non-existent people (Hare, 1975; Harris, 1998). Clearly, we must here focus on the embryo purposely chosen to save the life of his brother. Would this child be harmed? The answer to this question is confidently, 'No'; for the 'spare parts' that the new baby will 'donate' when he is born to his sibling - are stem cells from his umbilical cord, which is anyway a part of the baby, which ends in the bin (Wolf, 1999). Saving stem cells immediately after delivery is a procedure which is becoming routine in the US were parents acknowledging the value of these cells are saving them in specialized banks for future use if their child would need a perfect match. So physically the new child will certainly not be harmed. Would the new child be wronged? The answer to this question seems to me paramount. I have noted above that if this child is wanted and loved then there is nothing wrong by having this child. It can be suggested however, that this child is wanted only to save the life of his brother and thus - he might not be loved. And yet parents that undergo such an ordeal in order to save the life of their child might be remarkably loving parents; which certainly does not ensure they will love their new child as they love the existing child, however it is perhaps unlikely that such parents will neglect the new child; especially if he had saved the life of the other child. Besides, we do not usually ask parents-to-be if they are going to love their children when and if they have them. Take, for example, parents that decide to have the third child because they believe a good family 'should have three kids and a dog'. Do we ask these parents if they will love the third child? Clearly we do not. Finally, if we believe life is worth then being brought to life certainly benefits the chosen child. Who Gains, Who Loses? John Harris has observed that there is no doubt that caution is indicated when considering the acceptability of scientific 'advance' and the use of new technology. However, he adds:
"Equally we must be cautious about needlessly denying ourselves the benefit of such advance and such technology, particularly when it offers much needed and much desired treatment or offers a legitimate extension of human choice." (Harris, 1998a).The question of course is always, as Harris remarks, whether or not such choices are legitimate. Is this choice - genetic screening for a match in an embryo to save its sibling - legitimate? In Hebrew there is a saying which in translation is: "gain for one, loss for none". In this case one child gain is life and the new child loses nothing - on the contrary, he gains his life.
Dworkin, R. 2002, Sovereign Virtue. The Theory and Practice of Equality. Cambridge, MA: Harvard University Press..
Hare, R. M. 1985, 'In Vitro Fertilization and the Warnock Report'. In, Ethics, Reproduction and Genetic Control. NY: Croom Helm.
Hare, R., 1975, 'Abortion and the Golden Rule', Philosophy & Public affairs, 4, 201-222.
Harris, J. 1998, Clones, Genes and Immortality. Oxford: Oxford University Press.
Harris, J.1998a, 'Rights and Reproductive Choice'. In, The Future of Human Reproduction. Ethics, Choice and Regulation. Ed. John Harris and S¢ren Holm. Oxford: Oxford University Press.
Parfit, D. 1984, 'Reasons and Persons', New York: Oxford University Press.
Savulescu. J. 2001, 'Procreative Beneficence: Why we should select the best children'. Bioethics, 15, 413-426.
Wolf, S. 1999, 'Storing lifeblood: Cord Blood Stem Cell Banking'. American Journal of Nursing 99, 64-66.
'Designer baby' ruling condemned'. 2002, 18 July, BBC News, http://news.bbc.co.uk/1/hi/health/2134314.stm.
'Couple close to creating 'designer baby' 2002. 1 August BBC News, http://news.bbc.co.uk/1/hi/health/2165710.stm.
'Making a child to save the other' 2003, 20 May, BBC News,
'CORE wins judicial review against the HFEA', 2002, 20 December. COREethics http://www.corethics.org/